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Tuesday, January 13, 2015

Healthline interviewed me for their Facebook page. Here is that interview:

Read about why Linda is participating in the Best Health Blog
contest:

1) What inspired you to start
blogging?My husband, Jim, developed dementia at 49 years
old. After a series of tests, the doctor told us that Jim had dementia of the
Alzheimer's type. I knew nothing about Alzheimer's so my first reaction was,
"Isn't there medicine for that?" That was the beginning of the
journey where we learned that nothing would slow down the progression of the
disease and that it was 100% fatal. Jim died in 2005, ten years after the
diagnosis.

I reached out to the Alzheimer's
Association before we had a diagnosis, and they became my lifeline. I called
myself the Alzheimer's Association poster child because I took advantage of
every program and service they offered. I became an Alzheimer's volunteer and
advocate as a way of giving back to the Association and extending a helping hand
to others who were becoming acquainted with the harsh reality of dementia.

2) What would you do with the money
if you won?
I would use the money to help pay expenses to the Alzheimer's Advocacy Forum in
Washington, D.C. in March. I'm already registered for the 2015 Forum--my
fifteenth consecutive trip to advocate for Alzheimer's research and programs to
help care partners cope. Each year, I join hundreds of other advocates as we
don our purple "beauty queen" sashes and storm Capitol Hill.

3) What has been your best blogging
moment?
My best blogging moment(s) are when someone tells me they have learned
something helpful or found encouragement from one of my posts. I think my most
thrilling moment was when the national Alzheimer's Association featured a story
about Jim and me in their online newsletter with a link to my blog. That was
the first time that more than 100 people visited my blog in one day.

Saturday, January 10, 2015

It is with optimistic caution that I
share the latest good news regarding Alzheimer’s research from Stanford
University. They may have found the elusive and overdue cure for Alzheimer’s
disease. Over the past fifteen years, I’ve heard exciting news about Alzheimer’s
research that fizzled out after sailing through preliminary testing.

Is the Stanford University research
going to be exception to past experience? I hope so!

I’ve always heard that you can’t
keep doing the same thing and expect a different outcome. That is one reason
that grants are often awarded to researchers who try a new approach to the same
problem: What causes Alzheimer’s and how can it be cured?

The hallmarks of Alzheimer’s disease
are deposits of beta-amyloid plaques between nerve cells and tangles of the
protein tau that build up inside cells. Aging is the number one risk factor for
developing the disease, but it is not a normal part of aging.

Alzheimer’s is a
destructive and always fatal brain disease, currently the sixth leading cause
of death in the United States. Alzheimer’s relentlessly progresses from mild
symptoms to the final stages requiring constant care. People with the disease
live an average of eight years, but some live twenty years or longer.

Stanford’s approach is to boost the
brains’ own immune response to prevent and cure Alzheimer’s. Researchers at
Stanford University School of Medicine discovered that by blocking the protein
EP2, microglia cells will continue to cleanse the brain of dangerous beta-amyloid
deposits.

“The microglia are supposed to be,
from the get-go, constantly clearing amyloid-beta, as well as keeping a lid on inflammation,”
Dr. Katrin Andreasson, professor of neurology and neurological sciences at
Stanford, said.

Microglia cells are your own
personal defense system. Their function is to search and destroy dead cells and
other debris in the brain such as the gummy deposits Alzheimer’s disease leaves
in the wake of its destructive path.

Experiments on mice have been
encouraging. Microglia goes about its business of protecting the brains of young
mice. In older mice, the presence of EP2 proteins stopped the microglia cells
from doing their job of destroying the dead cells. Another group of mice were
genetically engineered to never develop EP2, and even when injected with beta-amyloid
did not develop Alzheimer’s. Even more exciting news for people with Alzheimer’s—blocking
EP2 in older mice reversed the memory loss!

Of course, a great distance
separates animal testing and drug development. Stanford has hopes of developing
a drug to block EP2. They believe a compound that only blocks EP2 would not
have unnecessary side effects.

Have researchers finally found the
key to unlock the mystery of Alzheimer’s disease? Time will tell if the
Stanford study is the long-awaited breakthrough and the end of Alzheimer’s.

Wednesday, January 7, 2015

According to my phone this morning the
temperature was hovering at a balmy nine degrees and a cyclonic wind pushed the
“real feel” way below zero. My last therapy appointment was today at 11:00 a.m.
I dreaded going outside and would have loved to burrow under the covers and
drink coffee. But, dang, I couldn’t miss my last appointment.

At least I was geared up for it to
be my last one. I was a little concerned since Monday as I entered the school
to watch my granddaughter play basketball, I tripped on the threshold. My right
shoe came off and I landed splat on the floor a short nanosecond later. Holy
cow, to add insult to injury, I landed on the very arm I had been working on in
therapy.

After the initial pain and agony, I
spent some quality hours on a heat pad. I downed some ibuprofen and didn’t feel
too bad on Tuesday, my day off from therapy. By this morning, I was ready to
give it a whirl.

Which brings me back to the weather.
I layered my clothing and put on my heaviest coat before I headed out the door.
When I got to Peak Performance the parking lot was much emptier than I’d ever
seen it. Sure enough, they had a lot of cancellations. After my therapy, I
headed for home. It was too darned cold to do anything else.

Cold weathers seems to breed misery.
There’s nothing that says “Big Chill” like frozen water pipes or a car that won’t
start. I remember the days when we drove an old vehicle, and Jim would get up
every few hours to start it up so that we would be able to go to work.

Every summer we complain about how
hot it is outside, but when winter hits, we decide that the heat of summer wasn’t
so bad after all. There’s nothing like getting hit with an icy north wind to
make you long for the dog days of summer.

This frigid winter weather can be
hazardous to life and limb. The weather advisory on my phone warned of frostbite
and hypothermia. During a cold snap in November, two homeless men died in our
town. I can’t even imagine how frightening it would be to be homeless when wind
chills are expected to be twenty below zero.

This type of temperatures are also
dangerous for people with dementia. Seventy percent of people with dementia
wander. While this is a concern in decent weather, severely cold weather
presents a real and imminent danger. Even dressed for the weather, time outside
must be limited. Too often people with dementia wander off without a coat, hat,
and gloves.

Cold weather isn’t too bad in a well
insulated house. I remember when we lived in a mobile home water froze overnight
in a cup I had left in the sink. We’d crank the heat up as high as it would go,
but the furnace couldn’t compete with the wind whistling around poorly
installed windows and doors.

I feel for people who live in older
homes that are not well insulated. Another time we lived in an older home and
the propane lines froze. We sent the kids to their grandma and grandpa’s
house while we tried to get the furnace working again and keep the water from
freezing. I remember us huddling under a blanket using a hair dryer to generate
heat. If that happened now, I’d probably just check into a hotel until the
spring thaw.

I shouldn’t complain too much about
the cold while I’m warm and cozy. I know that not everyone can keep warm in
this type of weather and that bothers me.

Yes, baby, it’s cold outside, but
better days are coming. I guess the cheery thought is—spring is only
seventy-one days away.

Saturday, January 3, 2015

This is the beginning of a new year,
and I think it’s time that we organize a revolution against Alzheimer’s
disease. The National Alzheimer’s Plan is to find a prevention or effective
cure for Alzheimer’s by 2025. When I woke up this morning, I realized that is
exactly 10 years from now!

Ten years may seem like a long time,
but it isn’t. It takes an average of 12 years for a drug to traverse the path
from research lab to the patient. Ninety percent of the drugs in preclinical
testing are never tested on humans. Of the ones that make it to human testing
only one in five will ever be approved.

So what can you do to join the
revolution? Assuming you are not a researcher, your efforts can be focused in a
different way. You can join the battle to End Alzheimer’s!

Contact your legislators. Write
letters, make phone calls, send emails, or visit them in district or D.C. The
government funnels research dollars through the National Institutes of
Health (NIH).NIH annually submits
a budget request which after modification is submitted to Congress from
the President. Alzheimer’s research is underfunded at $480 million. In
June, thanks to advocacy efforts, an additional $100 million was added to
the NIH budget. To put this in perspective, NIH spends $6 billion (with a B) on cancer research, $4 billion
on heart disease, and $3 billion on HIV/AIDS research annually. Researchers
use grants to develop treatments. Do the math.

Participate in Walk to End Alzheimer’s.
More than 450,000 participants in 600 Walks nationwide raised
awareness and funds for Alzheimer’s care, support, and research. The
Alzheimer’s Association is the largest nonprofit funder of Alzheimer’s
researchand the world’s leading
voluntary health organization for Alzheimer’s care.

Contact your local chapter. The
Alzheimer’s Association has 70 chapters that serve communities across the
United States. Chapters are the front lines in the battle against
Alzheimer’s. They will help you find the resources you need to navigate
through the quagmire of living with Alzheimer’s.

Arm yourself! No one goes into
battle without equipment, ammunition, and a plan. To prepare yourself, acquire
knowledge about the disease and develop a plan that will provide quality
of life for the person with the disease and the care partner. Learn how to
communicate and alleviate the stress caused by behavior.

Build a support system. Surround
yourself with friends, family, and loved ones who will support you. You
need people that will be on your side even when the going gets rough.
Build a medical team for the person with dementia and the care partner—primary
physician, neurologist, and specialists in any other illnesses such as
diabetes, heart disease, cancer.

Keep a log of all medical information.
Use pen and paper, a document, spreadsheet—whatever works for you—detailing
all treatments, medications, side effects, tests. This will help you fill
out medical forms and avoid unnecessary tests or medications that caused
side effects.

Enjoy life! Watch for moments of
joy and don’t stop living. Don’t place everything on hold. Alzheimer’s is
a disease that can last for decades. Learn to adapt to each stage and
pursue activities that put a smile on your face. Love and patience
overcome a lot of barriers.

More than five million people in the
United States currently have Alzheimer’s disease and new cases are skyrocketing.
Alzheimer’s is the sixth leading cause
of death and the only disease in the top ten without an effective treatment or
cure. No cure. A hundred percent fatal.

Where is the outcry? The outrage?
This country has never been one to sit on its hands and let a disease wipe out
millions of people—but that is exactly what is happening with Alzheimer’s.

That is why it’s time for a
revolution. This disease and related dementias—vascular dementia, Lewy body
dementia, Frontotemporal degeneration, mixed dementia, Parkinson’s,
Creutzfeldt-Jakob, normal pressure hydrocephalus, the rare dementias (including
corticobasal degeneration)—has to stop. NOW. It is time to arm ourselves with passion and knowledge
to eradicate Alzheimer’s disease once
and for all. Won’t you become an advocate and join the fight to End Alzheimer’s?

One of Healthline's Top 20 Alzheimer's Blogs

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Third Place in the 2013 Contest!

One of Healthline's Top Blogs

Voted one of Healthline's top blogs of 2012--4th Place in the Contest

Early Onset Blog in Top 25 2011 Alzheimer's Blogs - Healthline.com

Early Onset Alzheimer’s

This award-winning blog is a must-read for individuals experiencing early-onset Alzheimer’s. Less common than standard age-related dementias, early onset Alzheimer’s is virtually always a surprise to diagnosed individuals. Linda Fisher, blogger and author, knows the difficulty of this condition firsthand.

In her Early Onset Alzheimer’s blog, she teaches readers not just how to manage such a frightening condition, but also how to live life to the fullest. Her passion for helping others – showing everyone that life with Alzheimer’s is worth living – is a tremendous gift. Thank you, Linda!

Blog Awards

Early Onset Blog has received several blog awards. Due to new Google regulations, the links had to be removed. Past awards have included the #1 Health Blog , Top 10 blog in 2010, Top 25 Blog award in 2010, and a Top 50 award in 2012. We appreciate the recognition, but also understand the need to remove the links.

I went to sleep around midnight and woke up at 4:00 a.m. I tossed, turned, read, tossed, turned, and read some more. Finally more than t...

Linda's Blog Books

Books are a print version of Linda's award-winning Blog. These books are published for the benefit of those without Internet access or who just prefer to curl up with a book rather than browsing online. If you enjoy Linda's blog posts, you might want to purchase the book for a friend or family member.

Fisher began her online journal to share her experiences with families affected by early onset dementia. Her essays provide insight into family life often from a humorous viewpoint. She writes from her experiences as a longtime Alzheimer's Association volunteer and advocate and ten years as a primary caregiver for her husband, Jim.

Early Onset Blog

Alzheimer's Anthology of Unconditional Love by L. S. Fisher

The Fisher Center for Alzheimer's Research Foundation

I have participated in a link exchange with the Fisher Center for Alzheimer's Research Foundation. They have this blog http://earlyonset.blogspot.com/ listed in their Alzheimer's blogs.

Lindsay Nason wrote about my Early Onset Blog: "I want to thank you for sharing your powerful experience and your creative suggestions with others. . . . Your blog offers a unique and personal insight into this disease, which can be such a comfort to other members of the Alzheimer's community."

Thank you, Lindsay, for your kind words and for including the Early Onset Blog on your website.